Never Let an Ill Child Go to Waste

The Charlie Gard saga is one about which I’ve been reluctant to say anything, not least because plenty of other people have said plenty elsewhere. Sometimes they add heat, and sometimes they add light.

Beneath everything, the story is fairly simple: a small child is terribly ill; it is agreed by medical opinion that continued treatment is not only not in his best interests but would cause him positive harm; the courts have determined that the withdrawal of treatment is warranted. One sympathises with his parents’ fight to keep treatment going – but it does not follow from that that their opinions should be determinative. Indeed, the courts having decided that Charlie’s treatment should not be withdrawn immediately in order to allow his parents more time with him risks making the case about them, rather than about him. If treatment is not medically warranted and actually is harmful, there may be something worrisome about continuing it anyway for the sake of his parents. Their distress is not going to lessened by prolonging the child’s treatment, and even if it were, it is not the proper focus here.

So that’s my hot take on the story itself. I don’t think it’s anything too radical. Yet the coverage of the case has been, in places, something of a trainwreck. Take, for example, this piece from the Chicago Tribune (with thanks to Charles Erin for the pointer). It’s fascinating for just how much it manages to get wrong, and how mawkish it is, and for what it does with the story to such unpleasant ends.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.